Do I stay on this medication? Help please...

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I had an EEG a little over a year ago and have been put on 3 different medications with various dosages during that time, with no relief. Needless to say I am getting anxious to find something to help. I started a new combination of Keppra and Trileptal about a month ago and haven't felt any better. I get dream-like seizures where I feel like I can't concentrate and I'm not myself and they usually last for what seems to be all day sometimes. Anyways, I am wondering how long I stay on a medicine before I know if it works. I am at full dosage now and feel like I just waste days waiting to see if I'll feel better later. Has anyone asked or been told how long it takes for you to feel better from the medicine. I don't know when it should start working.thanks

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RE: RE: RE: RE: Do I stay on this medication? Help please...

Submitted by cookieparty on Wed, 2005-03-09 - 17:50

Good afternoon Batman, Thanks for taking the time to respond to my queries. I feel very fortunate when I read the the dozens and dozens of posts on this site describing horrifying experiences of persons with seizures disorders (whether it has been defined as epilepsy or not). And I know that I am lucky.Even my beautiful daughter in law who had seizures as a child and up until she finished puberty (that is what she tells me ..I didn't know her then), didn't experience any seizures again until after the birth of her third child. She was having petit mal seizures all day and all night and it took some time before the combination of Lamictal and Tegrital was found to be effective. She's had one seizure in the last 30 days and it was because she forgot to take her meds. She's had all the tests and is now waiting for results to a walking EEG? My term for it...they hooked electrodes to her head and she lived with the contraption for 72 hours. I'll let you know.Interestingly, she has adopted a cat that 'tells her' that she is about to have a seizure by clinging to her like a fur coat. And this cat also has taken to batting her pill box off of the dresser every night and picking it up in her mouth and carrying it to the middle of her bedroom floor where she drops it. Daughter in law and son watched her do it after finding the pill box there in same spot like 6 mornings in a row. They get the message that kitty doesn't want to see seizures! What do you think?As for me, I said I was GOING to start withdrawing from Topamax and I actually started last night by reducing my dosage by 25 mg. for a wk and then 25 mg more next week, ( I currently take 125 mg/day) etc. Doc didn't up the dose of Lamictal ...that is 100 mg twice a day. I don't mind telling you I'm nervous. I don't have the problems I've read here. I want my energy level back and I'm looking right now at a huge move up in position at work...still negotiating. They don't know anything because my problems have been nocturnal. I do know that today I am irritable and depressed. Nothing I can't handle. I went to the gym after work and I'm trying not to take anything too personal. If that is the only w/d I have from losing a drug in my system...yeah!My blood sample was 2.5 on a scale of 2 to 20. It was taken in the am before I took morning dose. I don't seem to have any side effects from Lamictal. Topamax side effects? Always tired, stupid and bad word recall ( counteracted by Lamictal), tingling and numbness in hands and feet, breakthrough seizures. I have been on Lamictal since early January but at 200 mg for 4 wks now. Thanks for your input...I'll check the links you suggested.

RE: RE: RE: RE: RE: Do I stay on this medication? Help please..

Submitted by Gretchen on Thu, 2005-03-10 - 03:20

Sorry (lousy memory) but to the start person of this thread? A thought I had was about these "dream" like feelings that last an entire day. The length would indicate a side effect but over time, that would become intolerable to me if it doesn't resolve. On the other hand if it's sz activity, and lasting that long, your doctor should know about it. Another thought I had was are you taking too much medication?Batman as always has excellent advice, including we're all different which he's several times I think posted. Probably realizes that since he is very knowledgable. Building on that? For me personally? I'm intractable officially because the side effects I've had to 11+ AEDs are incredibly intolerable. The only one that helped was Keppra, and that only with jerks, but I had to go off of it because it made me have black hole depression the first time I took it by week 6. Recently others have reported the same problem with depression and I think that's becoming a newly recognized problem for some on Keppra. Not all note, others. I've since been on a program when my jerks get to jiving too much I'm put on a short course of Keppra, or was. That helped for awhile but the depression started hitting earlier and earlier and I think now my epileptologist doesn't want to give that a go any longer.For me, just me? They found, if I can take it that long, that if I'm on an AED, hit maximum dosage, and a week later it isn't helping? I'm not ever going to adapt to the side effects as many intractable people don't and that's why we're intractable nor will my sz's reduce if they haven't by that time. I was miserable on Lamictal and my dosage was ratched up and down for about 4 months, for instance. That's happened on some others too but I've been on so many about 6 years ago, I've now blessedly started forgetting all of those experiences, and which ones did what. Some I'll never forget though. Feel like getting tatoos stating - "do not give me phenobarbitol, neurontin ....". I'm in a real pickle right now because I HAVE to get off of Dilantin, it's not debatable it's doing some real nasty things to me but the question then is - to what? I started, had to stop, so now I'm going to have to start it over again being slowly weaned off Dilantin and having some creative pharmacy going on with a pharmacist that specializes in AEDs. Frankly? I'm dreading it.Ever note there are nearly equal amount of threads on these blasted AEDs as there are on sz's at times?Gretchen

RE: RE: Do I stay on this medication? Help please...

Submitted by janb on Thu, 2005-03-10 - 12:02

batman

you sound just like my daughter

she has had every test you can have but still her seizures are not in control

she is on keppra and tregatol closapine

i sure wish her dr could find a combination of med for her

she is 33 yrs old and has had sz's for 19 yrs now and not one dr we have seen can control them as of yet

we live in hou tx close to the medical center

i know just what you are going threw

a loving mom